What It’s Like to Live with an Invisible Disease Like PsA

My name is Lori-Ann Holbrook. I am 48 years old and have been living with psoriatic arthritis (PsA) for most of my life, although I’ve only been officially diagnosed for the last five years.

Experiencing the stigma of PsA

I started feeling symptoms of arthritis before I ever presented with psoriasis. Both diseases have caused me shame in the past, but for different reasons.

Others can see psoriasis. Due to a general lack of understanding, the public assumes that because psoriasis can be ugly, it’s contagious. The resulting stares, looks of pity or disgust, and fear of touching us are pretty common in our everyday world.

Believe it or not, the stigma of PsA is even greater than that.

Although I am 48 years old and a grandmother, I look much younger. Imagine the reactions when I have difficulty standing and walking in public. There are still stares and looks of pity — not because of what folks see, but because of what they imagine they see: a pretty, overweight, lazy girl whose love affair with food has cost her looks and ability to enjoy her life.

My wonderful husband often has to lend an arm to assist me or arrange for a motorized shopping cart or wheelchair on certain outings. What the general public sees in him is not a caring soul, best friend, and lover, but an enabler who has also never seen the inside of a gym.

Ugly? You bet it is. Do I hold it against folks? Never. Before I got sick, I was one of them.

Raising awareness of PsA

In addition to writing about my experience with my PsA on City Girl Flare Blog, I’m a patient advocate, raising awareness on social media and among the general public about what it’s like to live with an invisible illness.

Any time I can reasonably open a conversation about my PsA, I share with others what’s going on with me. I’ve been known to say things like “Sorry I’m so slow. I have arthritis.” Or when asked about my cane, “I have arthritis every day, but on very special days, I use my cane.” This usually leads to an expression of surprise about my age. I then have the opportunity to explain: “The onset for PsA is 30 to 50 years of age.”

These small exchanges are all it takes for others to change their thinking, learn a little bit about PsA, and develop empathy for those of us living with an invisible illness.

I have even experienced prejudice when seeking the handicapped seat on public transportation. On non-flare days, I move along more normally, but no one can see how exhausted and painful that trip to the museum may have been. I continue to smile while they scowl, and then thank them as they give up their seat.

One young man even asked me, “Are you even handicapped?” Yes, he did! I explained to him that although arthritis is invisible, it’s the leading cause of disability in the United States. I assumed he wasn’t satisfied when I saw him complaining to the first mate on the ferry that day. I can’t win them all over.

Do I feel sorry for myself when these things happen? No way. As an advocate, I’m connected with people with PsA, as well as others living this “chronic life,” such as those with Crohn’s disease, HIV, and cancer. Trust me, someone in this community is surely having a worse day than I am!

If you’re living with PsA and you’re reading this, I hope you feel affirmed. If you’re not, I hope I’ve opened the door to the world of invisible illnesses for you.

Lori-Ann was diagnosed with psoriasis and psoriatic arthritis in 2012. Although she’s realized that it can be tough to stay active and enjoy life during a flare, or any other day, she believes the city life is the best environment for her. Although she’s not as able as she was when she was younger or before her disease got out of control, she still does the things she likes in the city: shopping, going to museums and shows, and lots of walking! Her blog, City Girl Flare Blog, shares her story and helps others living with psoriasis and PsA.